Diary of a sleep study inmate

I think it is a weakness of this blog that it doesn’t have any one common theme, it is just random thoughts about my life. I am always conscious of how much less interesting that must make it for people who have not met me personally and from time to time I consider what direction it would take if I followed one common subject matter. One topic that seems to come up far too often is medical problems. I wish that were not the case, but at least I can take comfort that once I reach senior citizendom, I will have found my niche and should have a very robust blog full of aches and pains and ailments. I will make a fine senior citizen someday. Of course, by then I probably won’t even have to type anymore, I will probably be able to hook some wires onto my head and a program will blog away with whatever is on my mind. It will probably look something like this photograph from my latest medical endeavor:

I'm a robot. Beep boop beep.









On Wednesday afternoon I walked through a monsoon to arrive at the Center for Sleep and Wake Disorders at 9pm. I did not leave until after 6pm on Thursday. I don’t know yet what the results were, but I sure hope they find something because that was a very time-consuming and unproductive amount of time spent in a doctor's office.

The reason the visit was so time-consuming is because there were two different tests. The overnight test was a Polysomnogram, which involved wires all over my body – mostly on my head, but also on my finger, face, legs, chest and I can’t remember where else. Throughout the night they monitored my brain waves (creepy!) and my movements to find out why I am always so damn tired. And I am tired all the time. I told them that, but they wanted more clinical information, which is why I had to stay for the entire afternoon.

After sleeping all night with all of the monitoring equipment, they woke me up around 8:40 on Thursday morning and removed all of the wires & sent me off to find breakfast with goop all over my head. I looked like a walking scene from Something About Mary. Yuck. Oh well, I’m sure they’ve seen worse at Whole Foods.

When I returned with breakfast and lunch for the day, they hooked me up to more wires and more goop. The second part of the visit was a Multiple Sleep Latency Test. This involved fewer wires and a series of five naps. Basically, they wait for you to come back from Whole Foods and set you up with a bunch of wires and send you to go back to sleep 90 minutes after you just woke up from a full night’s sleep. Twenty minutes later they interrupt you (either from your nap, or from staring at the ceiling b/c you can’t sleep) and they turn the lights on and make you stay awake for another 90 minutes before they send you down for another nap. Well, that’s not exactly true. They have to do some sort of calibrating before and after the naps, so you lay down and

“Relax with your eyes open. Now relax with your eyes closed. Without moving your head, look to the left, to the right, to the left again, to the right again. Blink five times. Grit your teeth. Relax. Grit your teeth again. Relax. Stick your chin out as far as it will go. Relax. Stick your chin out as far as it will go. Relax.”

This happened before and after every nap. It was weird and I had
these wires all over my brain and I kept thinking to myself, “Can you read my
mind? Are you reading my thoughts right now? Are you recording what I am
thinking? Stalker!” And then of course I couldn’t help but consider if they could read my thoughts, which led me to think of demented and gross things - like what I saw monkeys doing with their excrement at the zoo. Or horribly violent scenes from movies. I’m quite sure that they were not able to read my mind. Not only because I don’t think that sort of science exists, and if it does they’d have to inform me first (although, I was not very thorough in reading those HIPAA forms!), but also because they would have had me certified as insane if they had read my mind. I couldn’t help it. The more I tried not to think of crazy things, the more craziness that would enter my brain.

Anyway, after all of the blinking and the gritting, the lights went out and I put on my fancy eye mask to block out all the light and tried to fall asleep. The first three times, I fell asleep for sure. The last two, I’m not sure if I did or not. After 2pm and a full night’s sleep with repeated naps, it was harder to fall asleep, but when I heard a voice on the intercom telling me to wake up, I was not sure if I had been asleep or not. I suppose I was, or I would’ve remembered being really bored laying there for 20 minutes. I don’t know what they will find after they analyze the data, but I can’t imagine it is normal to get over 9 hours of sleep and still be able to fall asleep upon command. But what do I know? I’m not a doctor.

The weirdest part of the visit was the last dream I remember from my overnight study. I was sound asleep but in my dream I woke up and I was in a hospital. It wasn’t the same hospital bed I was actually in, it was more like a WWII-era hospital with nurses in crisp white uniforms and paper hats. In a movie, it would probably be the set for an asylum for the “Criminally Insane.” But a dream nurse woke me up into a dream world and sent me downstairs to join some other people. When I sat down with the other patients, another nurse came down to tell us that there was a tornado warning, but there was nothing to worry about. I looked out the window and saw a dark funnel cloud in the distance. I said, “Nothing to worry about? It’s coming this way!” and it was – the black funnel cloud quickly moved closer and I said, “We need to get down to the basement! Get away from the windows!” and some of the younger kids said, “Cool!” and ran outside to check out the tornado. I was freaking out and telling everyone I was from Iowa and I knew what a friggin tornado looked like and that was a funnel cloud. Everyone looked at me like I was nuts but I started running toward the basement as the dark cloud enveloped us and passed us. Nothing changed, the building didn't shake and suddenly there was sunlight. It was just a dark cloud. No tornado. As I sat there thinking, “What the f…” I heard the voice overhead, “Okay, it’s 8:40, we’ll be in to disconnect you so you can grab some breakfast.” Freaky.

Between my vivid dream and my crazy thoughts of having someone read my mind, perhaps this blog should focus more on psychological issues. Then again, maybe I'll just leave it alone. I'm too tired to think of a theme.

Straight up

I never realized how often I drop things until it became too painful to pick them up. The once-automatic act of picking up after myself became a daunting task. Think of how many times you drop something - a set of keys, a piece of paper comes off the desk, a napkin off of the kitchen table. No big deal, right? You just swoop down and pick it up. Not me. As soon as that item hits the floor I go through a battery of considerations, do an impromptu risk assessment and then formulate a plan for how to recover the dropped item. You just don't consider how handy bending is until you lose the ability to do so.


I didn't know it at first, but what I was dealing with was two herniated discs and mild spinal stenosis. For weeks I just thought it was back pain and if I rested for a bit it would get better. In the meantime, living with it was horrible. On the first day I walked into my apartment and accidentally dropped my keys on the floor. I took a deep breath and just stared at them. I stared at the floor the way you would stare down the Grand Canyon if you had just dropped your cell phone and were working up the courage to rappel down and retrieve it. It's so far down. I'm going to hurt myself. I may not make it back up. What am I going to do? Can I live without my keys? Can I just leave them on my floor forever and have someone make a new set for me? Perhaps I should just make dozens of sets of keys and when I drop one I can leave it behind as collateral damage - leaving the world littered with sets of keys. That seems like a reasonable solution. Anything sounds better than bending over.

Of course, I did not make a dozen sets of keys - I would need the original key to cut the duplicates. I had to slowly bend my knees with my back remaining upright and feel around on the floor to pick them up and hang them on the nail. It was a laborious task. It didn't stop with keys, either. I started to wonder if I've always been a klutz and never realized it. Every day I would drop something. The worst was when someone else dropped something by my feet. The polite thing to do would be to pick it up and retrieve it for them. Sorry pal, you are on your own. If someone dropped something on the Metro and it slid below my seat, I would just kick it back to the person. I would try to explain that my back is screwed up and I can't bend over. But the damage was done. It's really not polite to kick something at a person after they drop it. Especially when you're as uncoordinated as I am, and the item would likely get kicked past them, or somewhere within a 3-foot radius of their location. Precision is not one of my talents. It sucks when it's painful to be polite. It was not completely debilitating. I could still go to work, I just had to get up from my desk and walk every couple of hours so I didn't get sore.


One day, after a long day at work, I came home to find that a delivery person had slid a menu underneath the doorway of every apartment in my hallway. What the hell kind of masochist would do something like that? That's just great. What am I going to do now? How am I going to get this off the floor? I am going to have a pizza menu on my floor for all of eternity. What was that delivery person thinking? It was as if someone had vandalized my apartment and I had to figure out how to fix it. Cruel, cruel delivery driver.

The pizza menu stayed on my floor for a couple of days. I finally went through the process of getting x-rays and an MRI on my spine to determine what was causing the pain and that's when I learned of the spinal stenosis. The orthopaedic surgeon showed me the MRI results and pointed to a white line leading from my spine to my right leg. "Do you see the white lines? Those are nerves. Now look on your left side. Do you see how that nerve just stops?" It was creepy to see what's going on inside my body, but it answered a lot of questions. The herniated disc was bulging right into the nerves and cutting them off. Along with the back pain being on my left side, I also had been feeling like my foot was asleep. I often untied my shoelaces and loosened them because my foot hurt, and I thought I had just pulled the laces too tight and cut off my circulation. It turns out that it was not a circulation problem, but my nerves were affected by the back problems. At times it feels like I am walking on something underneath my toes. I must have taken my shoes off and straightened my sock a dozen times because I thought it was my sock bunching up below my toes. But my socks were never bunched. I was feeling something that was not there. I guess that is how the jumbled nerves manifested themselves. It felt very uncomfortable, but not painful like the back pain. The back pain was the worst.


One thing that was very hard for me when dealing with back pain, was that it was all internal. I didn't have a cast on my leg or a brace around my neck that clued people in on my delicate state. If someone didn't know me, they would think I'm an able-bodied young woman in my twenties. Looks can be deceiving. What looks like a 25-year old body on the outside, feels to me like it's 75-years old. I take public transportation everywhere and I struggle with finding a seat during rush hours. I have started waiting until later and taking the train when it is not as packed. When I get to work, I now take the elevator to the second floor instead of the stairs. It makes me very self conscious because I'm sure it just appears to other people as if I'm lazy. Some friends have recommended carrying a cane or wearing a neck brace, just to make it easier to find a seat on the Metro and on the bus. I can't bring myself to ask someone to give up their seat. How do I know they are not suffering from some internal injury as well? Who am I to pick and choose who should give up their seat for my ailing back? I never do. I just suck it up and go on and it seems to get a little better every day. If I have learned one thing from this experience, it is that you can't always tell when someone who comes across as rude or lazy is actually just dealing with pain in the best way that they can. If I have learned two things, it is that bending is awesome and is not to be taken for granted.

Keywords: Sharp, piercing, excruciating ear pain

When I sit down to write in this blog, I generally expect the readers will be my friends and family, or maybe some folks suffering from severe boredom. I'm always delighted to find out that someone new stumbles upon the blog randomly, but when I sit down to write, usually I expect it will be seen by a modest audience of a few regular readers. Well, tonight's blog is a little different. Tonight I'm writing for new people who are searching for the following keywords:
ear pain
sharp, piercing pain in ear
icepick stabbing sensation
excruciating ear pain
worse pain I've ever felt in my life
OMG my ear hurts so bad I want to curl up in a ball and cry
Will someone please tell me what the hell is causing the worst pain I've ever experienced!?!

Some time ago, I was having the absolute worst pain I have ever felt before or since. I had no idea what was causing it, and doctors could find nothing wrong. I spent hours on the internet trying to self-diagnose and found hundreds of things it could have been, but I didn't find any helpful information until I had talked to four different doctors and knew exactly what to type into a google search: TMJ

I went through hell trying to find out what was causing my pain. It would be accurate to describe it as feeling like someone is driving an icepick into my eardrum. Any time I would smile, chew, or move my mouth or ears in any way, spontaneous profanities would erupt from my mouth because the pain was so bad. I was actually worried when it happened at work because the stabbing pains would be so sudden that I couldn't help my outbursts. Imagine if you were to accidentally smash your fingers with a hammer, or slam them in a car door. Those words that would come out of your mouth... those were coming from me every time I smiled, coughed, or turned my head around too quickly. It was hell. And a recurring, unpredictable hell at that.

After a few episodes, I went to my doctor and he couldn't find anything wrong. He gave me some ear drops for the pain and said my ears looked fine. There was no sign of infection or any trace of what was causing the pain. He recommended I come back mid-earache so he could look while I was experiencing the pain. Of course, this always happened on evenings or weekends. He recommended an ear, nose & throat doctor for me to see. I made an appointment and the specialist said the same thing. Nothing looks wrong with my ears, come back when I'm having the problem.

The next time I had an earache was around 7:00 on a weeknight so I went to a Minute Clinic that was open until 8:00. I was about to pass out from the pain, but I walked my swearing self over to the clinic and had her look in my ears. Nothing. There was no sign that anything was wrong. Other than the tears streaming from my eyes and me talking through clenched teeth to try not to aggravate the pain. She prescribed me a different brand of ear drops and told me to go back to the ENT when I was experiencing the pain so they could take a closer look.

The ENT had me get a full CT Scan of my sinuses so they could see if that gave any evidence of what was happening. Again, there appeared to be nothing abnormal in the results. This went on for months. Twice a week I would feel a sudden pain in my ear and would have to lie as still as possible. I would lay down on my right side (it was almost always my left side in pain, but sometimes both.) Eventually I would pass out and fall asleep and the pain would be gone when I woke up. Usually. Sometimes I still felt a dull pain the next day.

Finally I had an earache in the afternoon, abandoned my job and headed for the ENT. I screamed as he looked in my ears because any movement to that ear would cause stabbing, excruciating pain. Even when I stepped off the curb, the motion from hopping down from the curb prompt a stabbing pain. He looked into my ears, I screamed like a banshee, he put down his instruments and told me everything looked fine. He could find nothing that could be causing me any pain at all, let alone the kind of pain that caused a scream that rattled the windows of his office. It was that point when he referred me to an Oral Surgeon because I may have Temporomandibular Joint Disorder: TMJ (or TMD.) He explained that the pain may feel like it's in my ear canal, when really it's in my jaw at the joint. In the neighborhood, but not even close to being the same thing.

As soon as he told me what may be causing the pain (and taught me how to spell it) I knew that's what was happening. The first painful episodes began after I had some extensive dental work, and I could connect the worst episodes to other activities that could cause a strain on the jaw muscles. Doctors had been poking, prodding and violating my ears, but could never see the problem because it was below the surface. That also explained why smiling or laughing would make things worse. Any time the joint moved, the pain would flare up again. It suddenly all made sense.

I was referred to an Oral Surgeon who asked some basic questions and took some x-rays. He said there could be treatment for the joint, but it was a last-resort measure. He put me on a diet of only soft foods for one month. Really soft. Ridiculously soft. I lived on mashed potatoes and applesauce for 30 days, suppressed my yawns, and basically did everything I could to keep my joints relaxed so they could recover. I kept my mouth shut for thirty days, and I am happy to say - it worked!

It's been a year and now that I know the source of the pain, I take extra caution not to put a strain on my jaw. I have gone to the Dentist three times since then and each time I reminded them of the TMJ and they let me rest my jaw so it's not open at full hinge the whole time. I don't chew gum, I don't eat anything that involves excessive masticating, and if I start to feel some pain coming on in that area, I immediately grab the ibuprofen to try and keep the pain at bay. In the last year I have had a bit of pain in the joint, but nothing like what I had been experiencing. Thank heaven for that because that kind of pain is intolerable, especially when it's as unpredictable as it was.

Other than the ibuprofen, it didn't take any surgery or drugs, but only a change in behavior to keep the worst pain imaginable from coming back. That is the reason I am writing this blog. I am not exaggerating when I say that I scoured hundreds of web pages, desperately trying to learn what could possibly be causing my intense pain. I found a few medical message boards, some of them were four years old, but most of the people writing about the symptoms were folks like me who were looking for a diagnosis - and then responses by people offering dozens of possible causes. I apologize to the regular readers if you've made it through this entire entry and feel like you're in a nursing home listening to people ramble on and on about their ailments. I know it's not interesting, but it's important to me. I needed to put my experience out on the web, just for the possibility that someone with the same symptoms may read this during a desperate google search like I performed so many times. Self diagnosis is not always recommended, but in this case all it took for me was to eat soft foods and relax my jaw to stop the most excruciating pain of my life. If you stumbled upon this blog because you were experiencing the same symptoms I was, reach for the mashed potatoes and applesauce for a while. Give your joint a rest for 30 days and if you see a remarkable improvement, you may have just learned something it took several months, numerous doctors, and too many incorrect diagnoses to discover.

It's March!

I'm not gonna lie, I'm phoning it in this time because I haven't written in a while and I want to keep this up at least once a month. I have also found a new motivation to blog in the form of passive-aggressive voicemails from my father. "Hello? I don't know if you remember me, but this is your father... my phone number is..." Yeah, I get it Dad. I remember you - the guy who would never buy me a pony. Okay, okay - how many "Are you dead?" messages do I need to hear before I get my arse in gear and update my blog? Hopefully no more. I will do my best to pop in with an anecdote every now and then just to let you know I'm alive. Perhaps something like this little gem:

I try to avoid Dentists as much as I can, even after they tell me I have cavities. Since I don't have money, I just put it on my to-do list until a later date. When it hurts to brush my teeth, it starts to become a priority. It was way past time to just grab my wallet and head to the doctor. So I did.

I went to my dentist and told him it hurt and we went through the whole drill.
*tap*tap* does that hurt?
No
*tap*tap* how about there?
No
*tap*tap ho..
YEOOWWW! Yeah. That one hurt a little.

Turns out I had an exposed nerve. It didn't hurt unless something touched my molar right on the gumline. Something like a toothbrush or an evil masochistic dentist. Since there is a huge filling on that particular molar he said he'd pull out the filling and put a crown on it. If the crown doesn't cover the nerve and it still hurts for a couple months, I may need to go to an endodontist and get a root canal. Sounds expensive.

I thought about it for a couple of days and was not crazy about going through a couple months of pain to find out if I need a root canal. Since it already hurts like hell, the process of getting the crown done sounds more painful than a root canal. So, I jumped rank and went to an endodontist recommended by a coworker. Before I did anything with my molars and naked nerves, I wanted to consult with the endodontist. I went in before work one morning, went through the whole *tap*tap* nonsense again and here's how that conversation went:
Doc: If it hurts that much now, a crown isn't going to make it go away. I think you're going to need a root canal either way. Do you want to just do it now?
Me: *sigh* Yeah, I guess so.
Doc: [stands up] Okay. I'll go get the novacaine. It'll take you a few minutes to get numbed up and then we'll go in and...
Me: Whoa! You mean NOW now? Like, right now?
Doc: [reaching for a gigantic needle] Well yeah we have time. If you need some time to think about it you can make an appointment to come back.

I'm thinking - What the hell is this place? Jiffy Lube? You walk in and twenty minutes later you get a root canal? I came in on a Monday morning to find out if I needed a root canal. Then I expected to make an appointment. Perhaps mentally prepare myself for the agony that comes with oral surgery. Now I have this endodontist sharpening his needles getting ready to drill through my tooth? I am never comfortable in making snap decisions. Especially on something involving doctors or a great deal of money, and this happened to involve both. I sat there for a moment, breathed heavily and realized that I was eventually going to end up back in this chair one way or another. At least this way I didn't have to take more time off work. So, he gave me the novacaine shots, I sent a text message to a coworker:

Plz tell boss my appt. will take longer than expecting. Getting root canal today.

And then he did it. I got a root canal at the drop of a hat.

Hah! I finished up and it's still March! I'll be back next month!